'We’re completely in the dark': Families still uncertain after Iowa Medicaid transition

Patti Murphy of Indianola speaks on behalf of her 39-year-old disabled daughter, Shannon, who survives on a ventilator.

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Teresa Mulhausen and her 37-year-old son, Ryan, are pictured in Ryan's condominium on Monday, Nov. 27, 2017. Ryan has Fragile X syndrome, autism and a seizure disorder and his family feels lost after being reassigned from AmeriHealth Caritas to United Healthcare.(Photo11: David Scrivner/Iowa City Press-Citizen)Buy Photo

First, she and her husband received a letter telling them that AmeriHealth Caritas — a national company that provided Medicaid services to their 37-year-old son Ryan — would leave the state at the end of the month.

That meant the Mulhausens would have to choose one of two other companies that oversee Iowa's privatized Medicaid program to provide services for Ryan, who has Fragile X syndrome, autism and a seizure disorder.

But there was one problem, Teresa Mulhausen said. The letter was delivered to her Iowa City home after the Nov. 16 deadline to choose between the companies, so Ryan was automatically enrolled with UnitedHealthcare.

It wasn't until Dec. 1, the day UnitedHealthcare took over Ryan's case, that Teresa Mulhausen got a call letting her know who her son's new case manager would be.

"We are kept in the dark," she said.

Unconfident in care

The transition process has not left her confident that Ryan's new case manager will have the same understanding of his needs as his former case manager with Johnson County Case Management, who worked with Ryan for almost 15 years.

Ryan's Fragile X syndrome, a rare genetic disorder, makes it difficult for him to handle sensory stimulations like loud noises and crowds. He lives in a condo in Iowa City that his parents pay for, and he's struggled when meeting new people or going to unfamiliar places. But with help from his longtime case manager and other care providers, like his job coach, he has made progress.

When UnitedHealthcare took over management of Ryan's case, representatives asked Teresa Mulhausen for records of the care her son receives, but she said isn't confident they realize how important some of that assistance has been.

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Teresa Mulhausen is pictured in son's condominium on Monday, Nov. 27, 2017. Mulhausen's 37-year-old son, Ryan, has Fragile X syndrome, autism and a seizure disorder and his family feels lost after being reassigned from AmeriHealth Caritas to United Healthcare.(Photo11: David Scrivner/Iowa City Press-Citizen)

"They told his old case manager that they’re not going to cut his services, but they don’t even know what his services are," she said.

One service Mulhausen fears could be cut is Ryan's job coach, who supervises Ryan at his two jobs doing janitorial work at Parkview Church and Kirkwood Community College, and drives him to and from work.

Ryan only works eight hours a week and will never be able to work without supervision, his mother said. But the job is still important to him.

"It helps get him out in the community," Teresa Mulhausen said. "He gets to meet people. He enjoys what he does."

Ryan's case is one example of the uncertainty that has played out in households around the state in the wake of AmeriHealth's decision this fall to leave Iowa after it could not reach an agreement with the state on reimbursement rates.

AmeriHealth and the two other companies chosen to manage Iowa's Medicaid program when it was privatized last year by then-Gov. Terry Branstad have complained of losing hundreds of millions of dollars.

AmeriHealth Caritas notified Iowa officials that it no longer wants to participate in the controversial project, which began last year.

The Mulhausens were not a part of that group, Teresa Mulhausen said, because they did not receive the letter informing them of their choice until after the deadline.

Teresa Mulhausen said she believes the only reason she received a call from UnitedHealthcare about Ryan's new case manager was because she gave a television interview to KCRG criticizing the transition process.

'Completely in the dark'

In an email Dec. 6, a UnitedHealthcare representative said "welcome calls to new members" began the week of Nov. 27, and said people with questions or concerns could call 1-800-464-9484, or visit the company's website, UHCWelcomeIA.com.

But on Dec. 11, a week and a half after UnitedHealthcare assumed care of AmeriHealth's former clients, Jan Jeter said she still didn't know who her son's new case manager would be.

"We’re completely in the dark on all that," she said. "We haven’t heard."

Two of Jeter's adult sons, Jim and John Jeter, have spina bifida, a birth defect that affects the spinal cord and can cause paralysis. Jan and her husband, Dean Jeter, live together with Jim and John in Iowa City.

John is covered by private insurance, but Jim has been on Medicaid since 2002 when he suffered a stroke that required neurosurgery and extensive rehabilitation.

One UnitedHealthcare representative did call ahead of the transition, but Jan Jeter said that person couldn't say who would be assigned as Jim's case manager.

"I don’t think they know who’s going to be assigned to who yet. She was in just about the same dilemma that we were," she said.

Part of the uncertainty is because UnitedHealthcare is still hiring new staff to help oversee the influx of clients. The company is taking on nearly all of the 215,000 people who had been served by AmeriHealth before its exit.

In the email to the Press-Citizen, a UnitedHealthcare representative said the company hired 300 new employees in November and has plans to hire at least 100 more to serve the new members.

In the meantime, the company has entered into short-term agreements with seven external case management agencies: Johnson, Polk, Linn, Bremer and Jones counties, the Department of Human Services and Connections Area on Aging.

The agreement with Johnson County allows it to continue providing services to its existing clients through Jan. 1, with the potential for two 30-day renewals. But the company suggested renewals are unlikely.

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Jim Jeter, right, is pictured with his brother, John, as he discusses his medical needs that are affected by AmeriHealth Caritas withdrawing from the state's Medicaid program on Monday, Nov. 27, 2017. (Photo11: David Scrivner/Iowa City Press-Citizen)

"Most agreements will not extend beyond 30 days as we are hiring more than 400 additional UnitedHealthcare employees to meet the health care needs of our members," UnitedHealthcare said in the email.

Johnson County case managers have been calling Medicaid recipients to let them know about the upcoming change. Many families are not happy they have to switch again after choosing AmeriHealth last year when the Medicaid program was first privatized, said Jane Wollum, Johnson County's case management administrator.

"There have been families that have been very frustrated with the process of being switched again, letting us know that they’re not happy that they may lose us, lose their case manager. It’s the same sentiment with most phone calls," Wollum said.

'They're people'

Teresa Mulhausen said the debate around Medicaid has obscured its impact on recipients' lives. She said people who don't receive Medicaid are often unaware that an unexpected accident could lead them to rely on Medicaid in the future.

"First of all, they’re people," she said of Medicaid recipients. "(Others) talk about enrollees, they call them different things, but they don’t talk about them like they’re people."

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In April 2016, three for-profit companies took over management of Iowa’s Medicaid program. Then-Gov. Terry Branstad says the program is saving the state money, but the companies say they are losing money. Critics worry about a loss of services.

Mulhausen wants people with serious disabilities and complicated medical conditions like Ryan to return to state-managed care — an option that Gov. Kim Reynolds has rejected. DHS officials say state oversight of the 10,000 people who tried to switch to Amerigroup will only last until that company has additional staff in place and can handle new clients.

In the meantime, UnitedHealthcare has taken on most clients, including Ryan, who had been served by AmeriHealth and need to work with a case manager to access services, making their care more expensive.

"(Ryan) needs to keep his case manager. They need to let the state of Iowa manage the waiver population because that’s where these companies are losing their money, the majority of it," Mulhausen said.

Mulhausen fears UnitedHealthcare won't be willing to bear the cost in the long run and will follow behind AmeriHealth in leaving the state.

"The 216,000 enrollees like Ryan, the ones that cost the money ... are now with this one insurance company that also lost $100 million," she said. "Now why are they going to be able to absorb all of this? They’re going to leave too. I mean, this is not a profit situation."

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Ryan Mulhausen's fish tank is pictured inside his condominium on Monday, Nov. 27, 2017. The 37-year-old has Fragile X syndrome, autism and a seizure disorder and his family feels lost after being reassigned from AmeriHealth Caritas to United Healthcare.(Photo11: David Scrivner/Iowa City Press-Citizen)

Jan Jeter agrees. She, like Mulhausen, is skeptical of the effectiveness of privatizing Iowa's Medicaid program. Although Branstad and Reynolds have said privatization will save money, the Des Moines Register reported last week that the cost of the program has roughly doubled to $504 million a year.

"We really wish it would go back to our local DHS," Jeter said. "That’s what our wish would be at this point. It just seems crazy to have this for-profit company and turn over all the money to them and then they can do whatever they want."

But UnitedHealthcare says it has a long history of working in Iowa and is committed to staying in the state.

"Having operated in Iowa for more than 30 years, UnitedHealthcare remains committed to Iowa and continuing to provide IA Health Link members with high-quality health care and a sustainable Medicaid program for the state," the email said.

Despite Jeter's frustrations, she recognizes her family is doing relatively well compared to many others. She recently retired from her job, while John works at Walmart and Jim has been a salesman at Play It Again Sports for more than a decade.

When Jim went on Medicaid, Dean Jeter got his certification as an in-home care provider. Reimbursements from Medicaid paid for him to take care of his son.

"We function very well here as a family, and between the four of us we figure everything out," Jan Jeter said.

But the switch last year to AmeriHealth was not smooth, she said. The family had several questions and had trouble navigating the company's online registration system. And payments to Dean for providing Jim's care were occasionally late or delayed by as much as a few months, Jan said.

Dean Jeter said he's worried the switch to UnitedHealthcare will be "another circus."

Although Jan Jeter doesn't know who will ultimately be assigned as a case manager for her son, she said the family is "hanging in there" and trying to stay hopeful.

"You’ve got to put your faith somewhere," she said. "But you want to make sure it’s not a blind faith, also."